Obituary for Lia Lee

The Modesto Bee has published a lovely tribute to Lia Lee, her devoted family and her contribution to knowledge and practice of medicine.

By Stephen Magagnini

Foua Yang crumpled in tears on the staircase in her south Sacramento home, just feet from the empty hospital bed where her daughter Lia Lee lived most of her life.

“I’m deeply saddened that Lia’s no longer of this world, I love her very much,” said Yang, clutching a picture of Lia as a lively 4-year-old in traditional Hmong finery, running from her mom.

Lia – who in July celebrated her 30th birthday in that bed surrounded by her mother, brother, seven sisters and numerous nieces, nephews and cousins – died Aug. 31 after a lifelong battle against epilepsy, cerebral palsy, pneumonia and sepsis, a toxic reaction to constant infection.

Her family’s struggles with hospitals, doctors and social workers were chronicled in Anne Fadiman’s best-selling 1997 book, “The Spirit Catches You and You Fall Down,” which altered America’s views on cross-cultural treatment. She became a symbol for all disabled children and immigrants intimidated and confused by Western medicine.

Lia Lee’s family allowed journalist Anne Fadiman into their home and private life, even allowing her to witness a shamanic ceremony performed as an attempt to call Lia’s spirit back to her body, back to her loved ones. They allowed Ms. Fadiman to read Lia’s medical records, interview her social workers. After the book was published, readers wanted to know what happened to Lia. The family continued to care for her every day of the rest of her life, but they did so in privacy. The American way of going public for self expression or for a cause, was not their way.
The Spirit Catches You and You Fall Down is a fair-minded and insightful account of the failures that led to a tragic outcome in the treatment of Lia Lee.

Kmareka has a nurse’s review of the book with links to Hmong-American sites. A generation of Americans are connected to Hmong culture through their parents who came here as refugees of the Vietnam War.

There will always be tragic miscommunications as we are all fallible. We can only and always strive to do our best. Lia Lee did not die in vain, the example of herself and her family teaches us all to do better.